I wanted to thank each of you for the wonderful support to yesterday's post . I wish I could come here with a clear answer to what is going on but I can not. But I want to share with you what I do know. That way you will know where things stand at with Philip . And I know many of you have blessed our family with prayers and with this information maybe it can help direct you what direction to pray. Without prayer I am not sure where we would be right now. I know most of you already know this... I am tired . I feel a little emotionally worn out right now. I am working really hard to clinging to my faith. And yes some days it takes works. But some days it is all I have.
After speaking with the DR yesterday and having him exam Philip we ended up with few answers and more questions. And while I know that sounds awful . But there are not easy answers. The DR has consulted anesthesia to see if there was damage done due to a traumatic incubation. Since Philip has been on a ventilator really too many times to count...100's of times and many times were for months..he does have some damage already. But these issues are new and this is what is concerning. There is a concern that he has damage to the spinal cord ..this is a big possibility due to the fact that they went into the spinal cord. And there is also a possibility that the syrnix has become bigger due to the trauma to the spinal cord. He has a syrnix in his spinal cord that is in his are that control the respiratory area..so this is a concern and will be watched very closely.
There is no one test that will say yes or no to any of these concerns. And that is frustrating. It is hard and it gets hard, real hard. There is not a tumor we can take out..and I find that even ironic to write since we can not get to the mass in the Brain stem. There is not chemo or operation or a machine..or anything that can fix anything. Today my daughter Emily took my breathe away ...she said something that shocked me. We were talking about Philip and she said...well he is NOT curable. When she said that I felt like someone knocked the air out of me. Did I know this...yes. of course I did. But to hear the words..made it real. Too real today. And to hear his little sister say that was hard to hear. And the look on her face showed how hard it was for her to know and say.
Last night my mom and I had a "talk". She was frustrated when she was asking question and I could not give the answers. And she had every right to feel that way..heck I feel that way. She said that she felt like everything we do to help Philip gets screwed up. Of course I went into mommy bear mode and let her know that the only other choice we had was to do nothing. Now my mom did nothing wrong. She was expressing what we all feel and have felt. But last night it hit me hard that we are NOT fixing anything. Even when we go to the out of state hospital..we are trying to save what we still have. I am pretty sure the damage is done. I know a stroke like his can not be reversed. I have had three Dr tell me that the left side damage is progressing..so I am fighting hard to get him somewhere fast to get some type of research program to see if figure out what is wrong and then if we can stop it. But first he has to heal from this operation.
I have many thoughts about miracles. I would like to share them with you in a separate post.
I thought I would mention how miserable he is. Today is in pain to move, throwing up, can not swallow and over all is feeling sick. I hate to see him so sick and in pain. I HATE HATE HATE not being able to fix anything for him. It takes away my very being as a mom. We are suppose to protect our babies. And from the day at 6 weeks old that I handed him over for his first brain operation..I feel like I have not been able to protect him. Wow that sounded emotional. Maybe I am emotional. Okay I am.
I guess what I am trying to say is..I wish we were FIXING something instead of always just coming in and doing something when the damage is done.
As soon as I know something more I will let you know.
Thank You all so very much.
30 comments:
I'm praying!
Amy - I can't begin to know how you feel, but I can empathize with your feelings as a mom. I hope you can feel the loving arms of God holding you up and taking the load for you today. I hope you are taking a few minutes each day to get outside the hospital and feel the fresh air and hopefully sunshine. I hope you can get some rest because I know you haven't had a good night's rest in forever. Just know that we are thinking about you and praying for you and Philip and your entire family. xoxo
Sweet friend - what a rough valley.
I don't have any trite words of encouragement. Anything to say, except that He who loves you (even more than you love Philip - so that's a LOT), knows what you're going through. He watched His own son suffer too.
I cannot imagine - but He can. Even though I don't have all the right words to pray specifics - God knows what you and Philip need. So I will pray for that.
Hang in there. One day at a time.
There is nothing I can say at this point but to tell you I am so sorry you all have to go through this and that I will keep praying.
Thank you so much for the update on Philip...you've all been on my mind more than you know! Just keep hanging on to that deep-rooted faith of yours with all your might!God Bless all of you! Sending many well wishes and prayers your way!
I can only imagine how horribly frustrating you must feel. I know when I have had loved ones in the hospital and I could not get a direct answer how frustrated I would feel. I am so sorry this operation has not worked out how you thought it would. I am surprised that they still do not know it there is spinal cord damage or not....I would think they would have been able to determine that by now. I will be praying for Philip, for his throat and swallow issues to be healed, I will pray that his spinal cord is fine and for continued strength for you too.
Sorry for the confusion, Amy! I just realized that my comment was written under my daughter's name, Abigail. Didn't know she was signed in!
I just posted at CB. If there is anything I can do or send, let me know. You are constantly in my thoughts and prayers.
My thoughts and my prayers are with you. You are doing an amazing job.
How frustrating, to be doing everything possible and not being able to do any more. I'm sorry you are going through this. I think it is understandable that you get irritated and thrown into Mother-Bear mode so often. It makes perfect sense. You're doing all you can.
(((Hugs)))
i am so sorry to know that you are going through this. your courage is inspirational, and i hope if i ever have to face something even half this hard, i hope i can do it with half your grace... xox... annie
Yes we all protect our children...but we are human and can only do what humans do. You have done and are doing all of that. I know you are mentally, emotionally and physically spent, but hang in...you ARE doing everything you can. I wish I could take some of your burden so you could rest...
I WOULD be emotional, and you deserve to let it all out Amy.
I am praying like I never have before that the doctors can figure something out and help your little boy.
All my love to you!
Oh Amy, my heart goes out to you. I have been praying so hard for Philip and will continue to do so. I am praying for a miracle, comfort, and a quiet peace. Thank you for keeping us updated.
Thanks for the update! Keep 'em coming.
BIG HUGS {{{{{{{{{{{{{{{}}}}}}}}}}!
Oh Amy this has to be so completely frustrating. Talk about having zero control. WOW!
God is not surprised or upset by any of what you are feeling. He wants you to completely trust Him now with Philip and every step of the way He will guide you. He is right there with you now and loves you all so very much!
Close your eyes and cry - let every tear fall and give Him the lies you are allowing to take over. Honey, you can't fix or heal Philip. There is nothing you can do to make him better. There is nothing you did to make him sick either. You are not in control of what is or has happened to Philip. You can't take back any decision made and God isn't asking you to beat yourself up over the past. Time to lay it all down and simply tell Him how very afraid you are that time is slipping away and you are losing this battle you have been fighting. Tell Him how much you want to watch Him fight this battle for you. Tell Him you are willing to completely give Philip to Him - as he truly belongs to God! He is a gift from God and we are all being blessed by the way God is using Philip to touch our lives. Not just an ordinary way but in special ways that only Philip can. Throw your hands up - be frustrated by the lack of answers and watch God reveal all that you need to know!
God has everything you need. All of what Philip needs too!
Much love and crying out for peace tonight! Rest in Him precious one!
Hugs once more!
Jill
If I could take away just a little piece of your pain, stress, sadness I would 10X's over. I'm praying louder, more and from the bottom of my heart.
Lifting Phillip, you, and your entire family in prayer...
Huge (((((((HUGS)))))))) coming your way sweetie....and I did get your gift and posted it in a comment on another post already : ) Thank you so much, I love it! I am praying for you guys....praying for a miracle.
Oh girl I wish there was something more that I could do for you in addition to prayer!
We are praying. I pray you feel the Loving arms of the Lord around you as well as all the prayers going out to your and your family right now. God bless you...
Amy, I'm praying. I'm sorry, I am behind on updates..but just know that you, phillip, and the rst of you family are in my prayers daily.
Amy B.. Please know you and your family are in our prayers.. Thank you for the updates on Philip...
God Bless!!
Amy~ Thank you for the update on Philip, OH I can't even fathom the pain your heart is feeling..I'm so sorry that you are hitting wall after wall. I know your struggle to hold on to your faith is probably another one of the worst things going on. My daughter and I are praying so much for you and Philip. I hope you can find it in your heart to release this burden to God and let him take over in everything...
((HUGS)) for you and Philip!!
Oh Amy - my heart is crying for you. I DO KNOW how you feel (not on the mom/son level but on the wife/husband level). This past year I kept going on like a robot - doing what had to be done and at times reality set in (very seldom) and I would think "we are getting NO where and it's just getting worse." Why oh why is this happening I would cry out. Why is God letting this get worse - aren't we good people - aren't we doing what you want - more questions than answers. It is such a helpless feeling. It's only been 6+ weeks since Jeff's been gone and I'm still asking questions with no answers.
Your mom is as frustrated as you are but I know she is/will be there for you.
All I can do is keep praying for all of you. I do believe in miracles. Does the hospital where Philip is in have any Priest/Clergy that could come to his room and pray over him?
Oh how I wish I lived closer to you.....
I'm praying too!
Sending you love and prayers Amy. I can only imagine how difficult this is on you all.
Totally keeping ALL of you held in prayers still..
thank you for keeping us updated!
I won't say that I understand how you feel, because I can't and I don't. I can only imagine the emotions that you & your DH are going through, not to mention the toll it's taking on Philip and the rest of the kids.
I do know One who does understand. He understands your fear, frustration, anger, sadness and helplessness. It's hard to grasp at times like this how God can take all of those negative emotions and turn them around. But it can be done. It is done through praise. Our praising Him in all things at all times, brings glory to Him. And when He is gloryfied, miraculous things begin to happen in our own lives. You may not see a gigantic miracle, but you will begin to see the small blessings taking place. Look for them, they are there. I know you know this, I just wanted to encourage you.
Love, prayers and Hugs from one Mama Bear to another!
Amy, my heart goes out to you. Your strength,faith and courage in all that you and your son are facing...you both are heroes to me.This all has to be so frustrating and overwhelming, but you face it with such grace.I wish there was something more I could do to help ease the stress and frustration.I want you to know you all are in my prayers constantly and how much we all care. Much love
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